Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

What is known about severe and very severe chronic fatigue syndrome? A scoping review

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jul 15, 2017.

  1. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
     
  2. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    I didn't find this exciting but I suppose they can only write about published studies.

    They found 7 intervention studies: all 7 approaches were behavioural, with one also mentioning antidepressants.

    A bit depressing that so little has been tried for the condition in its severe form.
     
  3. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    I have to say I get nervous when physiotherapists are involved with ME/CFS especially in its more severer forms.

    I didn't find much in this paper that was particularly reassuring.
     
  4. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    Results were not particularly good. I would have preferred if they hadn't mentioned this.
     
  5. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,238
    Likes:
    16,189
    Do you have a link to the full paper?

    Thanks

    CS
     
  6. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    barbc56, ScottTriGuy and Valentijn like this.
  7. Invisible Woman

    Invisible Woman Senior Member

    Messages:
    1,212
    Likes:
    7,414
    Very true but far better to leave the severe and very severely affected alone until they can at least guarantee they will do no harm.
     
    barbc56, slysaint, Barry53 and 9 others like this.
  8. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    Although the results are interesting, it seems very odd to mention this test in relation to those with severe and very severe ME/CFS. It clearly would not be suitable.
     
    barbc56, Cinders66, Hutan and 4 others like this.
  9. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    I am frustrated that this trajectory, basically deconditioning, is the only one explicitly mentioned.
     
  10. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    Any connection between using different subscales and the bio psychosocial approach seems very tenuous

    A bit concerning the they seem to be recommending the biopsychosocial approach over the biomedical approach

    People with ME/CFS can certainly benefit from energy-saving devices and support. However I'm not sure this is what they are saying and instead seem possibly to be blaming the environment causing people to become ill and/or suggesting changing the environment can help treat the people rather than simply not changing the medical status of the patient.
     
  11. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,811
    Any time someone's waffling about heterogenity and various criteria, it's a good indication that they don't think it's a biomedical disease. If they acknowledged PEM, OI, etc, and the tests which document them, things would be rather straightforward.
     
    sue la-la, barbc56, slysaint and 4 others like this.
  12. Invisible Woman

    Invisible Woman Senior Member

    Messages:
    1,212
    Likes:
    7,414
    Right but the hypersensitivity / hyperacusis is one of the more common symptoms for people ranging from mild to very severe. Obviously it affects some worse than others, but the symptom is there regardless of illness severity.

    Does illness severity also indicate severity of hyperacusis? Maybe if comparing the mildy affected to the very severely affected. However, is it not possible that the hyperacusis of someone who is severely affected might, at times, be milder than of a moderately affected pwME?
     
    lafarfelue likes this.
  13. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    Good that they say her psychiatric unit might not be the best place. But it is still mentioning rehabilitation which I find concerning.
     
  14. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    Paper highlights that severe CFS has been defined in different ways in different studies
     
    barbc56 and Invisible Woman like this.
  15. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,613
    Likes:
    12,435
    South Australia
    Agreed. There is just no way...
     
    barbc56, Invisible Woman and Dolphin like this.
  16. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    If I refer to this paper again, it will most likely be to look up table 1 which lists the studies that have been done on the topic.
     
    barbc56 likes this.
  17. bombsh3ll

    bombsh3ll Senior Member

    Messages:
    100
    Likes:
    464
    I have always been light and noise sensitive long before becoming ill. It hasn't changed noticeably either way. I'd put myself at moderate, plus severe OI.
     
    lafarfelue likes this.
  18. lafarfelue

    lafarfelue Senior Member

    Messages:
    138
    Likes:
    483
    Australia
    Same as you. I can't remember a time that I wasn't hypersensitive to touch, sound, light...
     
  19. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    2,001
    Likes:
    5,056
    USA
    barbc56 likes this.
  20. Solstice

    Solstice Senior Member

    Messages:
    614
    Likes:
    2,060
    The light and sound insensitivity I don't quite remember. I do remember strongly disliking people touching me. F.e. when you're in the kitchen with 2/3 people at the same time and keep bumping in to eachother and stuff like that, or worst of all hugs.
     

See more popular forum discussions.

Share This Page